Saturday, 2 February 2013

2013 so far

just a quick update as I have received a few messages wondering if everything is ok. In short, it is, but I just haven't been feeling particularly communicative recently. Also I am finding it difficult writing longer pieces. My eyegaze accuracy seems to be worse now and I spend more time deleting erroniously selected letters or words. It drives me f***ing mad and I eventually give up. So after spending an hour writing necessary emails, usually including ones to my incompetent care agency, I can't face embarking on blogging.

My neck is continuing to weaken so I am spending more time with my head resting on my chest.

So to bring you up to speed, Christmas went well, with our respective families visiting on christmas and boxing day. Haven't been out until recently but last week managed three trips out; Thursday afternoon, Les Mis at Esher cinema; Rocky Horror at Wimbledon theatre on Friday night and watching the boys bowling on Sunday.

We are currently preparing accommodation for a live-in carer. The live-in option has advantages and disadvantages but the PCT wouldn't fund anymore hours and the live-in route is cheaper for them.

Despite a live-in carer probably starting in a couple of months my care agency have decided to give me a new, completely inexperienced regular carer for the intervening weeks, expecting me to endure the stressful training period, only to start all over again with the live-in carer! Needless to say they have received some fairly strongly worded emails.

Hi Steve, good to hear from you. So sorry you've had yet more carer hass... unbelievable. Hope you've not got to wait too long now for the live in carer. Pleased to hear you've had some outings. I saw Les Mis last night and was blown away. Thinking of you all. Anna P

About Me

OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never. I thought it would be a good way of keeping anyone who was interested up to date with what's going on with us. Communication is getting harder and whilst I want to keep texting, emailing and chatting to everybody this seemed a good way of saying more things to more people more easily. Typing is a slow process (this has taken 20 minutes so far) so a once to many approach seemed good.
I hope to keep it up to date with various stuff including whinges about things MND related as despite trying to "keep positive" it does affect (in a generally f**ks it up kinda way)almost everything I do!
For those of you who really want to, you can check out my "status" on my web link.
Finally, PLEASE leave comments, even if brief as its the only way I know its being read!!